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MDs or MDS?

Big day yesterday, even if I left home blissfully unaware. I was expecting a blood draw and the usual ECP treatment. On arrival, I found out that I had not only that, but also a Dexa scan of my bones, to check the status of the osteoporosis. From there, it was off to pulmonary function testing to check for evidence of GvHD in my lungs. Then, 10 vials of blood for what seems like every test known, and then off to follow up for grip-strength testing and a timed walk related to the clinical trial I am in. My lungs, grip strength and walking were all satisfactory. After that, it was an appointment with the long-term follow-up transplant folks.

After some listening to my lungs, having various sections of skin pinched and mobilized for sclerosis evaluation, checking joint flexibility and having photos taken, it was off to ECP. A plus is that the ECP seems to be improving the scleroderma, a thickening/tightening of the skin associated with allogeneic transplants. The attending physician was surprised at the GvHD, as most Haploidentical transplants are essentially free of that unwanted side effect. Ah, but that applies to others! However, the quick lunch that I had wolfed down in between seems to have had some cross-contamination, which caused a flare of the rash on my upper body. Great timing!

So, a skin punch biopsy was done as I was connected to the ECP centrifuge (a non-exploding version!). But, I also learned that my marrow, while clear of lymphoma or leukemia, showed 2% cells with what is known as "[URL="http://www.mdsbeacon.com/news/2011/04/04/chromosome-20-deletion-is-associated-with-a-favorable-prognosis-in-mds-patients/"]20q Deletion[/URL]" a genetic error that is seen in cases of MyeloDysplastic Syndrome, technically a marrow cancer. It is a condition that will be watched and is not treated unless it progresses substantially.

Oh, still waiting for a call back from the podiatrist, as one big toe nail is now ingrown while I stubbed the other and it will have to be removed. In the lab, I saw a three year old who was in chemo for a childhood cancer. I have nothing to complain about.

You make my journey look like a veritable walk in the park, POGuy. It is truly amazing what you have endured (and continue to endure) in the name of both science and survival. You are an amazing person.

As K said, we are so far in a tolerable if not complicated existence.
You on the other hand I'm quite sure are responsible in part or whole for rewriting medical textbooks.
Yes I understand your mention of childhood cancers and indeed what do we have to complain about.
Unique you maybe not, inspirational most definitely.
And life goes on.
take care pal
Baz

Not all's rosy in the garden, but see following.
Stop grumbling Baz, your still alive and kicking so far.
Age and illness doesn't define who we are, but more what we are able to do.
Motto
Do what I love doing, when I can until I can't.
and dodging bullets in the meanwhile, too many bullets at moment.

PO, since I am comparatively new to this cancer I haven't a clue what you're talking about. But the anxiety, now... that I am well aware of. You have been so exceptional in your way of dealing with your cancer (cancers???) up to now that I am convinced you will keep on being the brilliant and tough fighter you have always been. For yourself and everyone else here reading your posts. If any one can, not only survive but transcend and thrive, in this situation it is you.

Simply mind boggling Po! For all that has been your journey and added "bumps" along the way, you my friend, is inspirational and that is putting it mildly. I know you do not like those accolades but they are true, at least in my mind and the mind of others.

I agree with Baz, you are rewriting medical textbooks for sure.

On the other note regarding that poor children, it kind of puts things in perspective when seeing someone so young have to go through so much at such a young tender age. Heartbreaking.

Geez po18guy!! Do you have a subscription to the Cancer of the Month Club?? To quote John Cleese: "All right, stop it now, it's just gotten silly....." Googling the 20q deletion gets you a sunny forecast of clear sailing and calm seas well over the horizon..... It would appear that the three most likely threats to your existence are boredom, motorcycles, and oncological whoopee cushions! Be careful where you step and sit!!

Cancer is not killing me, but all of you are, with your effusive praise. Really. So, good news from the podiatrist. I get to keep both nails and Dr. trimmed them up from their chemo-ghoulish forms. Left big toenail was 3-4mm thick and it takes a telephone lineman's pliers to cut it. Oddly, the left nail was attached only about 1/3 of its length, with the rest just hovering, unattached, over the former nailbed. Didn't know this. That makes it far easier to trim now. He could have pulled it and used an acid solution to deaden the root so that it would not re-grow, but thought it best not to, given my immune suppression. Agreement all around on that. He also said that we "special" patients have powerful doctors and advised me to have my hematologist or transplant F/U doctor call his office and "order" an appointment next time, as I would not then have to get the phone tree or any run around. DW and I were also good with that. So, off we went to a 30% off sale at a bead store, some local BBQ and life remains very good.

Not all's rosy in the garden, but see following.
Stop grumbling Baz, your still alive and kicking so far.
Age and illness doesn't define who we are, but more what we are able to do.
Motto
Do what I love doing, when I can until I can't.
and dodging bullets in the meanwhile, too many bullets at moment.